So Sorry
 

Dearest Suzanne,
I'm so very sorry this is happening to you and your husband. It's just heartbreaking.
I don't know about liver failure but my Mother had pancreatic cancer and her liver eventually failed. My Father had already passed four years before, so I promised him that I would take care of my Mother and I fullfilled that promise. I moved in with her when she became too sick to take care of herself.
I honestly don't know what I would have done if it hadn't been for Hospice. They stay in constant contact with the Doctor who is taking care of them, so they are able to dispense pain medicine or anything of that nature to help ease their pain.
My Mother's worst fears were that I wouldn't be able to handle it after she was gone and I had to reassure her daily that I would be OK and it was OK for her to go. Although, at the time, I really didn't feel that was true as I didn't think I would be OK if she left me. I had to say it for her sake and peace of mind.
In the end, she went into a coma. I still talked to her as if she could hear me. I honestly know that she did hear me because I told her to give my Dad a kiss when she saw him and she actually smiled. So, that was when I knew she could hear.
Suzanne, I wish you didn't have to go through this. I wish there was something I could do to help you.
Please take care of you through all of this. We sometimes neglect ourselves as all our thoughts are with our loved ones, but we shouldn't forget about us.
I wish you and your husband love and peace through all of this. Just come on here any chance you get to talk about it. I found the more I was able to talk, the better I became.
If there is anything I can do, let me know,
Thinking of you,
Linda :)

WoW Thanks for all the posts!
 

We spent Friday at the hospital supposedly for his second chemo embolization, but they couldn't do it as his blood was/is critically thin from Warfarin so now this week will be checking his blood daily and as soon as it is back to normal, they will be doing the procedure the next day. Apparently the first one on the left side of his liver did stop the rapid growth though there was no shrinkage. When the doc examined him, he had a horrified look that he quickly covered. Luckily Greg didn't see it. Apparently the largest tumor in the right side of his liver has distended around his side and is pressing on his kidney which is what is causing him massive pain. It shocks me that a person can even have "dozens" of tumors in the liver, but he does. Miraculously once it moved from his colon to his liver, it has just stayed there and gone nowhere else.

All the hospice info and the link are very much appreciated. I did mention it to Greg. His look was sheer terror as he associated it with no hope (as did I before I had more info) He is definitely not ready to give up. I have told him whatever he chooses to do or feel is prefectly valid and fine with me. He woke me last night because he looked in the mirror and thought he looked yellow. He was very pale, but he was actually much more yellow last week, but he never noticed. My husband is only alive because of strength of will. Over four years ago, we were told he had 4-6 months. I am in awe of his determination and strength. He worked and led a basically normal life for most of that time - though he had lots of chemo and surgeries. The fear definitely comes through more often now, but he isn't ready to give up. I feel like I am walking a tightrope of trying to be positive, but also at the same time trying to make it ok if he is ready to quit.

Last week I just kept expecting to find him dead and tried to prepare myself for that. Apparently my mother did the same thing for years before my father did during heart surgery a few years ago. Now I actually think he might make it till the New Year.

I can't thank you all enough for taking the time to answer my post. I have reread every post several times. I have really missed this board and am very glad to have finally found it after such a long time.

This will be another tough week for me as I have my own oncologist appointment on Wed. Hopefully it will be nothing. I don't think I could handle any more right now. It will be horrible if they do end up doing Greg's surgically implanted chemo on Wed as my appt is too important to cancel, and I can't be in two places.

Thank you (though that word isn't big enough for how much I appreciate your posts),
Suzanne

By the way, the answer to where I live is Miami, but the problem with transportation is my pain, and having a driver who doesn't know that the tiniest, silliest, little things make it soooooo much worse is terrifying to me! People who drive me regularly (basically mom and husband) know to avoid manhole covers, potholes etc and approach stops VERY slowly, or I won't even be able to get out of the car. I imagine lots of people out there can relate to that! :)

(((((suzanne & greg)))))

i know this is such a terrifying time for him. none of knows exactly what he is going thru. you know more than anyone. him keeping his will and fight for life...wonderful!

has he met or talked online to any liver cancer survivors? i see commercials for cancer treatment of america. i will try and see if they have a message board.

you have to take care of you too.

you and greg are both in my prayers.

Curious

here is the website for Cancer Treament Centers of America.
they have a toll free 1-800 number and a live chat.

http://www.cancercenter.com/

Suzanne,

I can really understand what you are saying about your husband's will and determination. I just happen to be in a position, because of your posts, to experience more directly YOUR amazing will and determination - not to mention your sensitivity, resourcefulness, willingness to accept input, and most of all, your courage.

I am happy to hear that you do have help from your mother - and it sounds like maybe some others as well. I urge to continue to use any and all potential help and not let normal anxieties and so forth to deter you. This is an extraordinary situation. Not only are you entitled to help, but in order to respect and honor both your husband's needs and your own, you must not turn away from any significant, possibly available help.

I have a strong sense that your priorities are well matched to your current situation. Something tells me that you will do whatever you can and need to do in order to be true to your self and to your relationship with your husband.

I will continue to hold a good thought for both of you.

rfinney

A few observations and thoughts that might help
 

Suzanne,

I can't add much to the great replies here, but hope my thoughts and experiences with serious life threatening illness can help.

In June, a CT scan showed a large mass in my lung. My lung specialist told me that the size, shape, and rapid growth were consistent with cancer. Lung cancer can be very hard to diagnose. As big as the mass in my lung was, if it were cancer, I’d probably live for just a few months. After the initial roaring confusion and despair when the CT scan results were told to me, I got my bearings back and started planning for my final days.

It turns out that I have what is called necrotizing pneumonia. The mass in my lung was dead and dying tissue. There appears to be no cancer, but cancer is still a possibility. Cancer or not, I was VERY sick and at serious risk of dying from the pneumonia in July. My health is now much improved. The latest CT scan shows the mass has shrunk to it's probably smallest possible size...a scar. I still have pneumonia, but it's well on its way to healing. It left me with some emphysema, and an appreciation of every day as a precious gift.

My inspiration and mentor in dealing with this was my best friend who had died of liver cancer about 10 years ago. How he handled the last six months of his life was the example I decided to follow. This is somewhat of a eulogy. I hope you and your husband can get some inspiration and guidance from who he was.

Bill Edmonston was an ex-Marine warrior for world peace, and a deeply spiritual man. When he got the diagnosis of liver cancer, he accepted the facts as they were and his prognosis. Warrior that he was, he dealt with his changed circumstances calmly, powerfully, and with acceptance. First, he told everybody who cared for him about his situation. Then he passed on his many "retirement" projects to others who were devoted to carrying on his work. These included an Indian Literacy project with two local tribes and a free or low cost speech and language therapy foundation he founded (called Logogenics, Inc.).

When his projects were in good hands, he and his wife drove from San Diego to visit friends and family in Texas, New Mexico, and Washington state while his health permitted. As he became weaker and as his pain increased, he withdrew to spend more and more time with his friends, family and grandchildren. He metered his morphine to be aware and active when awake and with other people, and to be reasonably pain free when he intended to sleep and rest. Amazingly, he attended the college graduation party for one of my sons two days before he died. At the party, he joked, sang, and played the piano and banjo for us. Most of the other guests didn't know how sick Bill was.

Bills spirituality ranged from a deep involvement in the Unitarian Universalist Church, through a wide ranging lifelong study of eastern thought and ancient Greek philosophy. He had translated the ancient Babylonian Gilgamesh epic, and had sculpted a series of bronze statues of the ancient Greek goddess Demeter. Doing both helped him understand these ancient philosophies and spiritual paths. Besides being very smart, Bill was an accomplished artist.

Most of us will never achieve what Bill did or have the impact on others that he did, but we can live and end our lives like he did, with grace, power, caring for others, and acceptance of what is.

If your husband wants to continue fighting this, by all means he should explore and try whatever seems reasonable to try. But, as the saying goes, "Hope for the best and plan for the worst." I know that you and your husband had a future planned, and expectations that have been dashed by his illness. Nothing is hopeless. But hope and a state of grace can come in ways and forms that we don't expect.

These days and months to come can be the most rewarding and profound time of your lives. His health may not allow a wild romantic trip to Paris or Hawaii, but he and you may now finally have the time and motivation to talk deeply of your feelings for each other, regrets you may have, apologize if you or he feel the need, and share revelations, hopes and wishes for each other and love for your family, and plan for life after he's gone. You can bond like you never have before. He can give up striving and find peace, and so can you.

You both have my deepest sympathy, hopes, and prayers.

So sorry
 

Dear Suzanne ~

I am so very sorry for all that you are going through. You have gotten some wonderful replies that I can't really add to ~ but I wanted to let you know that you and your Husband will be in my prayers ~

Much Love,
Sue

yes i did see people dying of liver failure
 

I am unable to work, have Hep B + Hep C for many years i seen young, old and middle age people dying of liver failure, myself i will dye soon, have similar symptoms with your husband, i am 43 y.o.

Not so lucky to have a caring wife, family or friends, i will dye in my room alone. I am just an immigrant out of luck.

I live in Vancouver, Ca, you can ask any question about liver failure.

It really is important to let folks know that Hospice is available at nursing homes. My father passed a little over a year ago. His medical problems were so numerous and complex that being at home was not an option. He spent his last 18 months in a total care unit with a private room and Hospice. We could not have asked for more loving care and knew his physical comfort was a major priority.

Dad was a musician. He had not appeared conscious or responsive for about a week before he finally passed. The day before, one of his aids brought her violin in and played for him for two hours. You could see tears going down his cheeks off and on durring that time. One never knows. Best wishes to all.